When my son was first diagnosed with Type 1 diabetes in 2010 at the age of six, I thought having a child with Type 1 was horribly demanding, overwhelming and downright torture at times. The constant checks of his blood sugar, the fear and worry about the nighttime lows, the all day adding of carbs, figuring out insulin dosage, and so much more that comes with parenting a child with diabetes.
We slowly settled into our new routine, our new life. My son went from getting six injections a day to pumping. (We switch his pump site every three days.) As he got older he started taking over some of the daily diabetes tasks on his own, like checking his blood sugar. Things were becoming more predictable and normal in terms of the daily management. His blood sugar numbers on the other hand were not predictable. You can control a few things when it comes to Type 1 diabetes, but definitely not everything, so if you are a control freak, be prepared to scream into your pillow every single night.
Five years after my son was diagnosed, we received a phone call from our local TrialNet, which we’d enrolled all our kids in after my son’s diagnosis. They explained to me that our youngest, a twin, was positive for all five autoantibodies associated with Type 1. While they continued to reassure me that this did not mean she would develop Type 1, that this only meant she had an 80% increased risk of developing it, to me, the phone call was the end of her normal childhood. The end of eating without counting the carbs. The end of not being woken up in the middle of the night to have her blood sugar tested. The end of my carefree days of not having to worry about her running around and dropping low.
After taking my daughter to the hospital for a glucose tolerance test, which came back abnormal, it felt like the world around us was standing still. We now understood that diabetes was going to be part of her life. I wanted nothing more then to let her enjoy the calm before the storm, and that’s what I attempted to do. I was watching silently and helplessly from the sidelines as an invader was taking over my tiny four year old’s body.
It’s been almost four years since I had a second child diagnosed with Type 1 diabetes. Learning to manage Type 1 in another, unique body has been interesting. My daughter was younger than her brother when diagnosed, she’s smaller, and unique in every way.
Wondering what our days are like? Pure chaos, but filled with laughter, and healthy kids.
A Day in the Life
Morning: We start our morning just like everyone does (almost…)
In a household with 5 kids to get up for school it starts with me waking everyone. Our two type 1’s check their blood sugar levels. At ages 14 and 7, they both now test themselves. We record their blood glucose numbers, figure out breakfast, and count carbs. Both kids use the same kind of insulin pump, which makes things a little less challenging. They bolus, and we go on our merry little way.
When they are not in school, lunch rolls around and we do the same dance just with different foods. Blood sugar checks, carb counting, insulin dosing. During a perfect day this doesn’t happen again until dinner time. But diabetes isn’t perfect, so there is usually a high or low between meals. When this happens, checks occur, low treatments or corrections happen.
When dinner comes, it’s time to bust out the meters once again, test blood sugars, count carbs, and dose insulin. On a day we don’t have insulin pump site changes, then we go on with our evening. However, a site change day looks like the image above.
Bedtime means snacks followed by the unknown world of nighttime blood sugars. Snacks means, you guessed it, blood sugar checks, carbs counted, and insulin dosed. And then there are 8-10 hours of time I may not know what their blood sugar is. We’ve used the Dexcom continuous glucose monitor and we’ve gone without it as well. So, we’re well versed in both types of nighttime checks. I’ve learned how my kids’ bodies work, and for the most part I can test them before I got to bed, and they are good throughout the night. But if it’s a day the girls have had cheerleading, or my son has had marching band, it means we could experience some delayed lows or highs from the day’s activities. That means there will be more nighttime checks, possible treatment of low blood sugars or corrections of high blood sugars.
With two kids with type 1 diabetes, I am on call from morning until night and every time in between. Diabetes doesn’t care if you had only two hours of sleep the night before. I’ve had nights were one kid was high and the other was low. In fact, recently, I dealt with ketones in the older type 1 and high blood sugars, and a low blood sugar at bedtime for little miss.
Raising two kids with type 1 diabetes is challenging, overwhelming, and makes me want to scream at times. But mostly it’s full of joy, laughter, and admiration for my very mature children who know more about their bodies at diagnosis than most people will know about themselves in a lifetime.